Every Storm Runs Out of Rain: Emerging from Virus Lockdowns and Vulnerable Populations

How are we going to end the COVID-19 virus lockdowns?  When are we going to go back to normal life?  You are surely wondering this, and your children are certainly asking you!  My teenager and ten year old would like to go back to their soccer games and birthday parties, and to be honest, so would I.  We miss human connection, and the opportunity to be with our tribe.  We miss pot lucks and barbecues, bake sales and tournaments.  We miss it all.  We even miss the things we used to complain about.

People are getting antsy in their second month of home confinement.  The common consensus is that with time, testing and slowly phasing out stay-at-home restrictions that we as a country will get back to normal.  I hate to be the one to break this to you, but this is a very rosy scenario, one that doesn’t take into account states and cities that are harder hit than others.  There’s no magic wand.  It’s not going to all go back to normal all at once.  In fact, it may not ever look the same in our lifetimes.

Most experts are saying normal life won’t resume until 2022.  That’s a long time. I have had a lot of anxiety about re-entering society.  As the mom of a child with multiple medical issues I’m worried about entering society too soon.  My daughter is one of the 20% of Americans who are considered “At Risk,”  along with cancer patients, diabetics, and people with auto-immune disease.  We already live with unpredictable futures and social distance.  We call it the Cost of Living Vibrantly.  If she gets sick, we go to the hospital. If one of her friends or our family gets sick, they notify us and we stay away. We’ve missed family gatherings at Thanksgiving and Easter multiple years due to family illness.  She’s been hospitalized over her birthday and Memorial Day. Everything can be dropped at a moment’s notice,  and though it is disappointing, it is necessary.  My daughter Wendy is exceptionally good at rolling with the punches, and it has served her well throughout her life because she’s missed out on a lot of events.

I’ve recently read a quote from Maya Angelou, who was quoting from a Country song:

“Every Storm Runs Out of Rain.”

It’s a version of “This too shall pass,” the idea that nothing is permanent, that nothing will last forever.  Winston Churchill once famously said, “If you’re going through Hell, keep going.”  But as I was thinking about the Maya Angelou quote more, I got to thinking that maybe we should think about some areas of the country right now as being rainier than others.  If New York City is suffering a deluge, South Dakota is in a drizzle.  Storms cancel events like concerts, soccer games, and other social gatherings.  When the rain or snow clears, and blue skies break through, people can start to go outside and see their friends.   It will be easier to reopen some parts of the country than others, and this is clearly an oversimplification, but it can in some ways be helpful. The question, “Should I go to Boston for my doctor’s appointment?” can be answered with the response, “Nope. Still too rainy.”

People, too, can be too rainy, or can have their own personal rainstorms. I like to think of Olaf from Frozen with his own personal flurry.  Where we live in southern Massachusetts might be ready to reopen, it might be considered “sunny,” but for my daughter, as well as for other people in the “At Risk” population, there’s still a chance for storms.  So we decide to stay home.  There will be a million situations in the next two years when we need to make this kind of decision, and a million situations among all the other twenty percent of people who have a medical condition.  It will be a patchwork quilt of decisions concerning risk and reward.

I would love it if our leaders considered a special recommendation for the “At Risk” population, to know when it’s safe to venture out.  When one out of every five people has a reason to stay inside, it makes sense to know when it’s Partly Cloudy, Chance of Rain, or a violent storm.  The combination of what the rain outside will be, along with personal rain clouds of people, will allow us to make better decisions.

I chafe at the idea that some people are posing that my child’s death, or the death of an elderly citizen, a war vet, or someone with underlying health conditions is an acceptable risk for the country to reopen in order to save the economy. I’ve spent a lot of my life keeping my own daughter alive.  There needs to be special measures put into place to protect as many citizens as possible, for as long as possible.  As I said in my last post, the people who are determining acceptable risk consider their “only” is actually my “everything.”  While I understand there is no playbook available on how re-opening is supposed to go, I beg the people who make these decisions to keep the At Risk population in their calculations for re-opening towns, cities, and states.

Please press your elected officials to consider the At Risk Populations when looking to emerge from Lockdown and stay at home conditions.  Thank you.

 

 

Fear and Resilience: Extreme Social Distancing

Greetings from Northern Vermont,

It has been a crazy week, and I’ve had some time to reflect.  Last week there was a confirmed case connected to Wendy’s high school, and as per her doctor’s recommendation we pulled her out, got a doctor’s note, and began the process of getting her tutored.  I asked if we could get the tutoring remotely because I planned on bringing her up to Vermont to ride out the coronavirus up here.

Because of Wendy’s multiple medical issues, even though she is young and in shape, she is in the twenty percent of people who are at high risk. It hurts my heart when people say that “only” twenty percent are at risk, because their “only” is my “everything.”  When I had spoken to her doctor, she laid it out very clearly to me:  there  is no vaccine, there is no treatment, and if you end up on ECMO, you are going to die, because they can’t do anything else.

So as far as I was concerned, we needed to keep her safe, no matter what.  She and her sister are my everything, not just a portion of the at risk population.

When Wendy called me on Monday morning (3/9) because of the coronavirus case connected to her school, I had just arrived in my parking lot of my own school (I am a middle school teacher at a private school a few miles away.) I informed my front office that I had to go back, told Wendy I would drive around to the back of the school, and then bring her home. She hasn’t been back since.

I then went to my own principal, and together we worked out a “remote teaching” schedule. The computer teacher put a large screen in my room, and colleagues manned the room on their prep periods while I taught classes from my house. This way, I wasn’t bringing home the virus to my daughter without knowing it.  I taught this way for the remainder of the week, until the 13th, and now the school is on our regularly scheduled vacation.  I am so indebted to my colleagues for doing this for me.  But to be honest, I still wasn’t sleeping.  I was worried that my other daughter Penny or my husband would bring home the virus.    We began to cancel social engagements left and right, soccer practices, karate classes, yoga, etc.  My husband asked to work from home, but still had to go in a few times to check on things.

I pulled her younger, healthy sister out of school on Wednesday after Governor Baker said that students would not be penalized for their absences, and when I asked for guidelines on how to teach Penny I was told that teachers were instructed not to give out any work, or any guidelines.  Schools have since been closed by the governor until April 7, but they have not been given any work, and will not be given any in the name of equity, but also because teachers’ unions don’t want to set a precedent.  Wednesday night President Trump gave his Oval Office address and the NBA shut down for the season.  Stock futures plummeted.

On Thursday, 3/12, after I taught my online classes, we made our way up to Vermont.   I had packed the car early in the morning.  Five days’ worth of clothes for each of us, lots of arts and crafts, a few puzzles, some food items I knew Michael wouldn’t eat, all of Wendy’s medical supplies, some games, school books, snow pants and outdoor gear, and yoga mats.  I made clear to the girls that there would be no stops.  No bathroom, no gas, we were travelling door-to-door.  After we unpacked at my parents’ house (they are not here, they’re snowbirds, splitting their year between Vermont and Florida,) I looked to see what they had and what I would need.  The answer:  they didn’t have that much and I was going to need to do a lot of buying.

This was a setback, as I had already prepared our house in Massachusetts.  Now I had to recalculate.  I already had all of Wendy’s medical supplies, but we pretty much needed to get all the food, and I was planning on being here for a month.  We went to the supermarket and bought enough for four weeks of staying here.  People looked at us like we were crazy.  Who needs all that food?  We do, because I don’t plan on going back out.

Here’s the deal.  There are people who have coronavirus with no symptoms, or minimal symptoms, and after testing, scientists at Princeton have found that the coronavirus can stay alive for up to three days on stainless steel and plastic.  So someone who doesn’t know they are sick can leave the virus on an object three days ago, and my kid can get sick from it today.  That’s terrifying.

Moving up to Vermont was strictly a numbers game.  There are fewer people in the state of Vermont than there are within the city limits of Boston.  More people, more potential illness. Fewer people, less potential.

But when I see citizen continue to go to amusement parks, and wearing green to go to  Saint Patrick’s Day parties at bars, or being told to continue going out to dinner, all I want to tell them is PLEASE STAY HOME.  Your social distancing will lead to fewer cases all at once, and fewer cases all at once means that our medical system won’t collapse under the strain.

My friend Susan lives in Rome, and today (3/17) I was going to fly on a plane and visit with her. She works at the UN, in the FAO, and I was going to speak to a committee there about foodborne illness, which is originally how Wendy got sick.  Through her unfortunate experience of living in the age of coronavirus in Italy, Susan has been coaching me on what to expect, how to prepare, and when I suggested Vermont, she thought it was the right move.  In Italy the medical system has collapsed, and the entire country is in lock down, because Italians didn’t take it seriously, didn’t act fast enough. 

We can do better.  We have to do better.

Thank God my parents have this house.  Thank God I have access to it.  Like everyone else, I’m trying to navigate the daily activities of my kids so we all don’t go crazy. We have a schedule, they have academics, and I’m grading papers and working toward my virtual schooling that I will be transitioning to.  We go for daily walks, we are working on a 1000 piece puzzle of Star Wars. After dinner we play UNO and watch something on Netflix on a laptop. (My parents don’t have cable.) We eat lunch and dinner together, and I’m trying to teach them to monitor their snacks, how to do laundry, and how to entertain themselves.

I’ve started offering yoga every morning at 9 am on Facebook Live, as a way to connect to the outside world, and it’s nice to connect to my friends and bring something good into their lives, because like them, I’m in self-isolation.  But for us it’s pretty extreme and the potential consequences are dire.

Honestly, I’m finally sleeping again because we are here, though I miss my husband who is still at our home, with our cats, and who isn’t sure when he will be able to make it up.  Wendy thanked me when we got here, she had been worried too. The girls only want limited knowledge of what is going on in the world, and they don’t want me to talk about number of deaths.  so a lot of that information I have to keep to myself.

Wendy has mentioned to me that in a way she feels like a princess in a tower, like in the fairy tales. I think that’s an accurate way of putting it.  It’s better than being a princess in a hospital bed.  So I guess if we are working through the roles of the fairy tale, then I’m playing the part of both the knight and the dragon, protecting and guarding the kids.

I have no way of knowing what will happen, I can only do what I can to protect my kids.

Please, don’t go out unless you need to.  Practice social distancing so kids like my Wendy, and families like my family, don’t have to practice Extreme Social distancing.  We are scared enough every day as it is.

 

 

 

 

Coronavirus and Chronic Illness: Preparations not Panic

I have been thinking a lot about the coronavirus lately, especially because I’m the mom of a chronically ill kid.    Because of my child’s complex medical needs, she gets sicker faster and harder than the average kid, often times ending up in the hospital for common illnesses like the flu or a stomach bug.  In 2019, she was at the hospital three times, and admitted for a total of five days.

So as you can imagine, the coronavirus was a bit terrifying. Seeing hospital workers on television in full hazmat suits and masks, watching sanitation workers spraying down marketplaces and basketball courts with some kind of disinfectant, well, it made me feel like I was watching some sort of end-of-the-world-movie that I try to stay away from in the theaters.

But then I realized, in a lot of ways, we as a family are always preparing for illness, but now everyone else is too, and there are a few differences because of the larger scale.  So  I thought I would write a blog post to talk about what we’ve done in the last few days.  I am not an expert in the scientific sense but I am an expert in the being-a-parent-of-a-sick-kid-sense.  So please read what scientific experts have to say too, and I have linked news sources to this blog.

Here’s what I did:

1. Gather information from credible sources.
2. Make common sense changes to your hygiene.
3. Take stock of what you have:  food, medicine, cleaning supplies.
4. Write a list of what you need, including household items that might run out.
5. Shop without hoarding.
6. Contact child’s school to find out a plan, or to help make one.
7. Talk to employer to make plans for absences.

The first thing I did was start to gather information.  I started watching statistics on the virus, and reading blogs from virologiststo see exactly what we are dealing with on the world stage.  I read scientific articles on the virulence, and spread.  Then I looked at the CDC website to see what they suggested, and theFEMA websitefor emergency preparations.

My husband and I reviewed hand washing with our kids.  We already are pretty good at hand washing, but we reviewed it again.  Wash hands before meals, even in school. Wash hands after the bathroom.  Hand sanitizer after school and supermarkets ( have it stashed in the pockets in each car door, so when we get in to the car, we all use some hand sanitizer.)  I even took the girls to Bath and Body Works and let them pick out special personal hand sanitizers that they liked the smell of to keep in their pockets.

The CDC recommends that we have enough food and medication so that we can use social distance to minimize the spread of the virus.  Covid-19 can spread up to six feet from one person to another, so keeping more than a polite distance is necessary. Now imagine how many times you are closer than that to other people in a given day:  at the supermarket, on public transportation, and at school or work.  If these things close due to coronavirus, do you have enough food and prescription medication to hunker down for a few weeks?  Think of a snowstorm and your preparations, and then times that by four.

So this week, we went through my daughter’s daily medication and her insulin, and reordered what we might be low on in the next few weeks:  test strips, blood pressure medication, and one of her supplements.  I looked in the pantry and it looked pretty good, we had rice and pasta and beans, tomato sauce and canned soup and mac-n-cheese, but I added a few more of each item.  I bought a few containers of shelf stable milk.  I got an extra loaf of bread and put it in the freezer, along with a few extra packages of meat for dinners.  The only really unusual items I bought were some canned fruit and some frozen vegetables, as we usually eat fresh, but there’s no way fresh vegetables will stay fresh for two weeks.  I figure if we don’t use them by the summer that I will donate them to the local food pantry.  And I bought a few items for the food pantry now.

We went through our cleaning supplies, and had plenty of wipes and sprays.  We had enough paper towels.  I ordered more toilet paper from the non-profit that I always order from.  We always have hand sanitizer around as my daughter is immune-suppressed, but we were low on lysol disinfecting spray, so  I bought one of those for home, and one for my classroom. (I teach middle school.)

Then we looked at household items that might run out.  We needed a supply of AAA batteries for my daughters’ insulin pump and continuous glucose monitor….and let’s not forget that AAA batteries also run the television’s universal remote!  We bought more cat food and kitty litter, more tampons and pads, more band-aids.  But really, that was it.  I felt like we were “topping off” our supplies and that were in a good place if we needed social distance to stay away from infected areas, or if places closed.

A word about masks.  Multiple sources say not to buy them, but we already have some because my daughter wears them regularly when she flies.  However, there is a danger of a world wide shortage, so we will not be buying more.  Let the people on the front lines of health care, the doctors, nurses, even receptionists and transport staff have them.  We need important medical personnel to be there and be healthy.

Then I turned to my daughter’s school.  Because of her medical condition, she has a 504, which gives her certain accommodations based upon her medical need.  I contacted the school in order to schedule a time to review and possibly add to her 504, to include remote access learning if illness in the area ran high.  The administration team responded that they were in the process of preparing a tiered response system to the coronvirus problem, and to give them a few days to get back to me. Ok, no problem.  Wendy is on their radar, I will follow up with them next week.

Finally, I turned to my own work.  I teach history in a private middle school with students from multiple towns and even two states.  I spoke with my humanities team and we are creating a “shelf-stable lesson unit”–a unit that can be placed at any point between now and June for three weeks with open domain sources and daily questions. Because we are studying up to the Civil War this year, we chose Killer Angels, The Red Badge of Courage, and Little Women.  This can be transferred to our Google Classroom site at any time and be enacted as soon as it’s needed.  Hopefully we won’t need to enact the unit, but it’s there if we do, that’s why I’m calling it “shelf-stable.”

The best advice I can give is don’t panic, but prepare. There are lots of things we can’t control, I have learned that as the parent of a chronically ill child.  Sometimes, even with the best of plans, the day goes pear-shaped.  But staying informed and slowly preparing will keep you from panicking and will help you in case things get shut down.  God knows if and when that will happen, but if it does, I know I’m ready.  And that lets me sleep at night, knowing that I’ve done the best I can to keep my kids safe, both the healthy and the chronically ill.

One more thing I want to say:  think about donating to your local food bank at this time.  The lowest month for foodbanks is February for a number of reasons.  Imagine going through this worldwide pandemic without the means to feed yourself or your family, and all those kids that are on free or reduced lunch who won’t get fed if schools close.  If we all bought a few food items and a few cleaning items, imagine how that would help others.  Because in the end, we want all kids to be happy and healthy, and that means feeding them.

Feel free to share this blog post with those you love, and the best of luck to you!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Dear Anti-Vaxxers: Your Decision Puts My Child At Risk.

Dear Anti-Vaxxers,

I know that you have made a decision to not vaccinate your child, based upon information that you feel is valid and important. I’m sure that you agonized over your decision, weighing the pros and cons. I know that you are looking out for the best interest of your child and your family. Perhaps you think it is the natural way to approach parenting. I have a different view, however, and I’d like to share it with you.

I am the mother of a chronically ill child. Twelve years ago she contracted an e-coli infection, which turned into a syndrome that blocked the small blood vessels of her body, depriving them of oxygen, and killing off parts of her organs. It’s called Hemolytic Uremic Syndromes, and it’s one of the reasons that meat and vegetables are recalled when it’s discovered that they have e-coli. It’s not just a few days of diarrhea. It kills young kids when it’s serious.

My daughter was lucky. She survived. But she has many scars, literally and figuratively as a result of 200 days as an inpatient at Massachusetts General Hospital. When she was five years old, just eighteen months after the initial infection, she underwent a kidney transplant because her kidneys were so damaged from the e-coli. The transplant was miraculous in many ways. She went from needing 24 medications around the clock to needing just a handful every day. She went from sky-high blood pressure to now manageable levels. She’s still a diabetic from the infection, that didn’t go away, but like many others in the country, she has a healthy and sensible diet, and she takes insulin. Her load is a heavy one, but she handles it with grace and humor. She is a fighter and an optimist.

She is now a fifteen year old, a freshman in high school, beautiful inside and out. She is a leader on her track team, running her 100 meters in under 13 seconds. She is a striker on her soccer team. She competes in triathlons. She is a referee for youth soccer, and she speaks to doctors at Grand Rounds.

When she is healthy, life is very, very good, and we are very, very grateful.

But my daughter is immune suppressed. Like the thousands of tiny babies who can’t get vaccines yet, or like the thousands of people who are undergoing chemotherapy. For the rest of her life, in order to keep her kidney transplant, she needs to take anti-rejection drugs, which weaken her immune system, making her sicker faster and harder than normal kids. When most kids get a 101 fever, you give them Tylenol. When my daughter gets a 101 fever, it means 72 hours in the hospital, blood work, and preventative IV antibiotics. Every time. Our lives stop and we go to the hospital. We worry that this is the time something goes wrong. Every time.

That’s just for a cold, or the flu, or a urinary tract infection. 72 hours in the hospital, blood work, IV fluids. Every time.

Now let’s talk about measles.

Measles was declared cured in the United States in the year 2000, and now it’s back. It is not just an inconvenient fever and rash, just like e-coli doesn’t just cause diarrhea. For a small percentage of kids, like my daughter, it can be life threatening. It is life threatening.

Let me explain. If my daughter, or a tiny baby, or a person with cancer, gets the Measles, they get sicker faster, and harder, they go to the hospital, they might need a respirator, other unusual parts of their body will get attacked, and they very possibly could die.

My daughter could die from a disease that was declared cured before she was born.

Yesterday, forgive the term, shit got real. I received a message from Massachusetts General Hospital Transplant Center, that said if my daughter came in contact with any one who might be infected with Measles that I was to contact them immediately for hospitalization, for IV immunoglobulin, to prevent the infection from taking hold, or to fight the infection before it got bad.

Because if the Measles have a 90% infection rate for a normal, healthy child, imagine what the rate is for my immune-suppressed child.

So, dear Anti-Vaxxers, your decision to keep your child from getting vaccines has endangered my child. It may kill her. I understand that you were worried, but of what, exactly? The link from vaccines to autism has completely been debunked. Do you feel that it is your right to put the life of your child over the life of my child, or over the life of those too young to get the vaccine, or those struggling with a life threatening illness like cancer?

Please think of vaccines as a community service. You are vaccinating your child to protect the group. You are the strong, protecting the weak. That’s what communities do. That’s was civilized societies do. We protect the weak who cannot protect themselves. I am speaking not just for my daughter, but for all the immune-suppressed people in this country.

You do not know who walks among you, at terrible risk. You don’t know the woman struggling from breast cancer. You don’t know the age of the baby. My daughter has multiple scars on her abdomen, but there would be no reason for you to know that she is immune-suppressed. Yet your decision could kill her.

Please, please, reconsider your stance and vaccinate your child. If your child is sick, please keep them home. If your child has the Measles, please report it to the Health Department. If your child does contract the Measles, I hope it is a mild case.

If my child contracts the Measles, I hope she doesn’t die.

I’m sure that you would wish that for me too, the safety and health of my child. As parents, it’s all we ever want.

Thanks for listening.

 

(Please Note:  This letter is also published in Medium, by me, on this day.)

View at Medium.com

Living Through E-coli

The last week has seen a massive recall of Romaine lettuce, following a massive recall last year of Romaine lettuce.  Why?  The Romaine is possibly carrying e-coli.

E-coli is a bacteria that is found in the intestines of cows.  When cows poop and leave manure in the fields, and then it rains, you get e-coli in the water system.  When humans ingest the e-coli bacteria (depending on the strain), they can get incredibly sick.  But the newspapers don’t do it justice when they report on it. Newspapers say most people get diarrhea and some get further complications like kidney failure. That doesn’t really tell you what e-coli looks like, or what it does to the family or the patient.  So I’m going to tell you our story.

My daughter is a survivor of E-coli.  Though I do not often tell the whole story, I think it’s important at this moment to share it with you.  It’s not pretty.  In fact, I have said on numerous occasions that I wouldn’t wish this on my worst enemy.

At the age of three, on Father’s Day morning, she woke up and said she had a belly ache.  That belly ache turned into diarrhea and vomiting. The diarrhea turned bloody.  Though she was potty trained she needed to go back into diapers and I needed to change them every fifteen minutes.  She stopped peeing.  She got pale. She screamed in pain for days on end.  I could not comfort her.

When her pediatrician suggested that we get a stool sample, we leaped at the suggestion, and hand delivered it to the hospital.  Within a few hours we were air lifted from our home in Randolph, Vermont, to  Dartmouth Hitchcock Medical Center.  We were told that Wendy had a complication of E-coli called Hemolytic Uremic Syndrome.  We were told that her kidneys had already shut down and that we were being transferred to Massachusetts General Hospital.  We left at daybreak for Boston in an ambulance and our lives were never the same again.

Wendy’s kidneys did not function for over three weeks, the shiga toxin in the E-coli broke down all of her blood cells.  The doctors were afraid something else was wrong but could not do a lumbar puncture (spinal tap) because they were afraid she would bleed out.  Her white blood count was higher than a leukemia patient.  She began to have seizures, her blood pressure would bottom out, and she would be revived with epinephrine.  Though it was not indicated, the doctors decided the only course of action to possibly save Wendy’s life was to give her antibiotics to kill the bacteria, though they knew that by killing the bacteria they would be releasing all the toxin at once.  The doctor gave me a hug and suggested that both of us sleep in Wendy’s room that night, because, well, you know why.

She lived.  Her kidneys stuttered back to working after about 21 days but were permanently damaged.

A few weeks later, they discharged a brave fragile warrior and her parents, but we barely made it home when stomach pain began again.  Her intestines had closed up as a result of the scarring from the HUS.  We were rushed back through three states and she had a primary bowel resection:  the surgeon removed about six inches of large intestine, and she stayed in Massachusetts General Hospital for another month.   We made it back to our house in Vermont in September.

I took a year’s leave of absence from my job, teaching at the vocational school in our town. Instead I became an expert in caring for my child.  Wendy was also now a diabetic (her pancreas works at 15%, again a victim of the e-coli) and she had serious dietary restrictions.  First, the diabetic restrictions and injections, and then the diet of someone with kidney disease:  low magnesium, low sodium, low potassium.  I begged to get a referral to a dietician because I had no idea what to feed my child.  I made lists of things she could eat by meal, 10 possible breakfasts, 10 possible lunches, 10 possible snacks, 10 possible dinners.  I had lists of low potassium foods and high potassium foods.  Of course all of her favorite foods  were high potassium, so I became an expert at measuring and substitution.

A stomach ache again in October, just before Halloween, where Wendy was going to be Fiona from Shrek.  More of her intestine had closed, more to be removed.  This time, the surgery resulted in an infection and sepsis, and Wendy coded in the PICU and had to be revived in the middle of the night.  Attending physicians came flying through the doors as Michael and I sat in the waiting room, one finally sitting down  next to us and said, “What the fuck happened?”

Seven more weeks in the PICU, with Wendy unconscious.  Chest tubes and PIC lines.  More pumps than space on the pole, so there were extra pumps in the bed.  Teams of doctors and nurses  and pharmacists honestly not sure what was going on.  They tested her for AIDS and Cat Scratch fever on the same day.  They were grasping for straws.  We went through Thanksgiving without her conscious.  They only thing she could do was cry.  She started to improve, slowly.  We had Christmas in the hospital. We couldn’t bring her home.  When we asked, the Doctor said if Wendy was going home, she was going with her.  We got two hours to bring her to our apartment in Boston and open up presents.

At New Years we “celebrated” in the hospital and saw the fireworks from the 17th floor of the Ellison building.  The doctors thought they could release her if we stayed locally, so they released her, but she was on so many medications (24 of them, all taken in two hour increments around the clock) that her digestive system couldn’t take them all and they readmitted her before her birthday on January 9th.  She had no candles on her 4th birthday cake because you can’t have open flames in the hospital.

By the end of January they released her again but she went into heart failure and was readmitted.  They floated the idea of a heart transplant, but decided to wait and see. We watched the Superbowl from the PICU.  She also spent Valentine’s Day in the hospital.  New restrictions were placed.  No more than 750 milliliters of liquid a day, I administered it in tablespoon increments.   I had to measure her urine.  I had to weigh her twice a day, take her blood pressure  twice a day, call the doctors to adjust medication almost every day.  They knew my cell phone number by heart.

By this point, we decided that Wendy and I had to move to Boston semi-permanently, that we couldn’t risk her health and the weather.  So we rented an apartment in Charlestown and she went to three different doctors a week.  This was March. She slowly started to get stronger.  I would take her to the park, I would take her to the art museum, the children’s museum, the science museum.  We walked miles in the city.  She took five medications just for her blood pressure.  She took two medications before she ate any meal.  She had insulin shots once before bed and with everything she ate.  I was a mobile medical lab in my purse.  But she got stronger. She improved.  She grew back muscle and hair that she had lost during her illness.

By Mother’s Day they told me she was going to need a kidney transplant, and we went through the testing process.  No one in the family could be a match.  A few friends tried but had their own health problems.  We needed to wait for a deceased donor.  She was listed in October and transplanted on the last day of January, 2009.  She had just turned five.  I wondered if it was going to be her last birthday.

After the kidney transplant she continued to improve.  She went up up up.  The doctors peeled away her medications. She went from 24 down to her current 5 medications that she takes every day. She still is a diabetic.  She still needs to watch what she eats and how much she drinks, but she appears to be a healthy, active, athletic, child.  We are so proud of her.  And we have met a veritable army of amazing people: doctors, nurses, child life specialists, music therapists, phlebotomists, etc.  I am grateful with every cell in my body for their hard work and dedication.  We leaned on the strength of friends and family, of other e-coli survivors, and met other amazing organ donors and transplant recipients.  And I learned a lot about myself, my husband and our marriage, that we can survive anything, even our daughter almost dying multiple times.

But to be clear, all of this happened, ALL OF IT, because of an e-coli infection.

Now you know why I wouldn’t wish this on my worst enemy.

We do not know how Wendy contracted her e-coli.  It could have been the hamburger she ate at my end-of-the-school-year picnic. It could have been swimming in the river.  It could have been eating bagged carrots.  We determined for our own sanity that we were glad we didn’t know the source of the infection because one or both of us would feel never-ending guilt if it was the hamburger, the carrots, or the river.

Here’s the thing:  e-coli infections used to be rare, but they are becoming more and more common.  And there’s a straight line reason to the problem:  growers aren’t required to test the water they use to irrigate their food crops for pathogens like e-coli.  So if no one is testing for them, the only way we find out the pathogens are there is because people get sick, and sometimes they die.  The Obama Administration constructed rules for the FDA to begin implementation to mandate water testing, but the new administration has tabled the testing mandate for four years.  And people keep getting sick.

Farmers contend that testing water is too expensive.  Well,so are medical bills.  So is chronic illness.  So is never getting your life back the way it was.

So what to do?  Doctors have told me that if Wendy gets e-coli again that she won’t survive it.   I have been considering growing my own lettuce at home, easier in a Massachusetts summer than the winter.  I’m looking at greenhouses and hydroponics, grow lights and aero growbeds.

But I’m also going to be contacting the FDA to get these water testing regulations sooner rather than later.  If I can keep one other person from living through the hell that we’ve lived through, then it’s worth it.  If I need to tell Wendy’s story over and over again, I will.

This is too important to sit this out and wait for the regulations to go into effect in 2026.  How many people will suffer and die before then, on something that can be easily fixed and seems like a no brainer?

If you’d like to read more about it, here is an article published before the latest outbreak called The Science is Clear: Dirty Water is Making Us Sick.

If you’d like to talk to me, leave me a message.

 

 

 

 

We Brought Our Kids to the Vigil

By now you know about the terrible tragedy in Pittsburgh.  Eleven faithful Jews gunned down by a madman, fueled by rage and social media.  You know that it was the gathering time for a Bris, a naming ceremony for a baby boy, just eight days old.  A celebratory time, a time to welcome that baby into the congregation.

It was an unspeakable tragedy in America.  A collective gasp was heard across the nation, but in my town especially. I live in a small New England town with multiple synagogues, christian churches, and even a mosque. We have an active interfaith community.  To see the news unfold and to see the antisemitism in America grow and go unchecked is terrifying.

I contacted a rabbi in town and asked if there was going to be a vigil and she sent me the information.  It was to be held at the largest synagogue in town on Sunday evening. As I sat down for lunch with my family, before going to Wendy’s soccer game, I told them that we were going to the vigil to support the Jewish community during this time of mourning and fear.  I explained what happened in Pittsburgh and said that it was important for us to go.

The kids didn’t really want to go.  But I pressed the issue, along with Michael.  We said they didn’t have much of a choice.  We are not Jewish. And We were going.

Vigils are uncomfortable.  Looking at death is uncomfortable.  But it’s important for the community, especially the gentiles, to go and show support.  Stand up, show up, and shut up.  Our job is just to show them they are not alone.

As we walked to the synagogue that evening, I held Penny’s hand and told her that if she had any questions during the service, that she should ask them and I would do my best to answer, but to make sure she asked in a whisper because people will be lost in their own thoughts.  We thanked the police officers who were guarding the door for being there.

The synagogue  held hundreds of people and it was standing room only.  We ended up snagging four chairs in two different rows:  Penny and me together, Wendy and Michael ahead of us.  The rabbi of the congregation where we were meeting thanked everyone for coming, stating that just by coming we showed that we were not afraid to be in a synagogue after the violence.

Then the words of comfort from different rabbis of all the congregations in town. There were a few songs that they sung in Hebrew first and then allowed us to join later in English.  One rabbi asked us to be silent for a minute and a half.  Another asked us to introduce ourselves to the person next to us and looking around I saw lots of friends and neighbors, both Jewish and non-Jewish.  After the rabbis, a catholic priest spoke, words of healing and solidarity.  Then the imam from the mosque in town spoke with words of comfort.  At the end, all of the religious leaders stood together on the bema and spoke the names of those who died, and then we all rose and together sang “God Bless America.”

At the conclusion, there were lots of hugs.  The woman in front of me, who was sitting next to Wendy told me how lovely she was.  Penny spotted a friend and ran up to her to say hello.  But overall there were very few children, which was a shame.  There is a fine line between scaring children senselessly and showing them ugliness in the world in a way that has meaning.  Michael and I felt the girls were old enough.

And when I asked Wendy this morning in the car, what she thought, she said, “I think it was good.  It was good we went.  And I think it was important to sit in the temple to think about what happened and to show our support.”  And I realized that it really was the right thing to do, Wendy got it.  She understood the importance.

I felt like our little town got it right last night. I was glad to lend support to resilience, and I was glad my kids were there.  In a few weeks there will be an interfaith Thanksgiving at the same synagogue, and I hope to go with my girls, this time for a celebration instead of a great sadness.

It’s good to show my girls that communities come together in good times and bad times, but especially in bad times.  We all have trying times, but it is community that pulls us through. We stand together and lean on each other.

It’s what communities do.

Storms Make Trees Take Deeper Roots

Fitting into the working world as a mom of a chronically ill kid can be challenging.  I have found that for the most part, part-time work has been the best fit.  It’s flexible, it’s convenient, and it allows me to still take Wendy to doctor’s appointments, or call insurance companies, or figure out prescriptions and durable medical devices, or whatever.  Being the mom of a chronically ill kid can be a lot of work.

But I still want to be a professional, and I have trained to be a historian, or a teacher of history.  For the past ten years I have worked part time as a history adjunct in both Vermont and Massachusetts.  Recently, the college where I worked shuttered its doors.  It was devastating to all involved:  students, professors, and administrators.  We had all been cut adrift with not so much warning; we were told in April that the college would close in May.

So I needed to take stock of what I had done for the past ten years.  I had cared for my very ill child, I had advocated for her in a hospital setting. I had monitored and adjusted her 24 different medications, her three different insurances, and her doctors in three different states.  I had spoken at Grand Rounds, had spoken to medical students and new residents.  I had helped to revise documents released to the public about medical conditions.  I had created a welcome video for children when they arrived in the Emergency Department, sick and scared.  I had lobbied politicians and representatives for medical insurance rights.

Here’s the thing:  no one cared.  No one in the medical world would give me a job based on these qualifications.  They thanked me for my service and after the initial interview I never heard from them again.

I also applied to many different part-time teaching jobs.  I had lots of experience, I’ve taught lots of different subjects, from world history to American history, to Native American, African American and women in American history.  I’ve taught courses on totalitarianism and brought students to concentration camps.  But when I was asked why I worked part-time, my response of taking care of my daughter while working was seen as a liability.  They thanked me for my services and after the initial interview I never heard from them again.

Let’s be clear:  I’ve worked hard for the last ten years.  I’ve had to do things to and with my child that I would not wish on my worst enemies.  I have been brought to the edge of sanity with grief and worry and sleep deprivation.  But as I suspected long ago, the rest of the world does not value that kind of commitment, or organization, or dedication to taking care of my child.  Most people see me as a liability, though I’ve never missed work, I’ve always managed.

I’m an excellent teacher.  I’m an excellent caregiver.  I can be both.  I have been both.

This time has really damaged my self-esteem, because even though being a parent of a chronically ill kid is hard, to be honest, I really thought I had my shit together.  The college closing was like a slap in the face,  the world I had created was shattered like a false mirror, revealing what the rest of the world really knew, really thought of parents of chronically ill kids.

I wondered if keeping this blog, after my experiences this spring and summer, was just an exercise in vanity.  Maybe, I thought, I should stop writing.  But I realized other people, other parents, must feel the way that I do, working the hardest job in the world, and feeling undervalued by society.  So I’ll keep writing, at least for now, or until no one reads the blog posts anymore.

As a postscript, I have found a job, and I really love it.  The problem is that it’s full time, and I’ve been struggling mightily with the other aspects of care.  My chronically ill daughter and her doctors’ appointments and insurances.  My other daughter who is well but seeing less of her mom.  My husband who is valiantly picking up my slack in those departments and whom I couldn’t do any of this without.  I’m sure that these will be other blog posts in the future.

Moms and Dads of chronically ill kids, know that I value you and I know how hard you are working.  I know from experience.  The world may not value the struggle but other parents recognize the hard work it takes to resemble normal.

Keep going.  Storms make trees take deeper roots.

Happy Father’s Day to all the Kickass Dads Out there.

Father’s Day is a hard day for my husband, because it was on Father’s Day 2007 that Wendy first announced she had a stomach ache.  That stomach ache turned into a life threatening bacterial infection, that turned into cascading organ failure, sepsis, and an eventual kidney transplant, abdominal surgeries, and a variety of secondary diagnoses.

I can understand why he doesn’t like the holiday. But I wish he would get over it because he’s a kickass dad and we need to celebrate that.

When Wendy was in the hospital, over 200 nights as an inpatient, he spent almost every single night with her.  They had their own routine: They would walk me down to the entryway, come back, set up the beds, brush teeth, get in pajamas, and then read Harry Potter.  While in the hospital they read almost the entire series.  After hours they would sometimes go for walk in the hospital, to the PICU to see the fish tank, or to look in the gift shop window.  When I arrived in the morning with coffee, we would both stay to listen to rounds and then he would head back to our hotel room to take a nap, because honestly how much sleep did he honestly get on a tiny bed in a hospital room?

When Wendy was released, and the family still had to live in Boston to be close to the hospital, my husband looked for an apartment that we could afford and where I would be comfortable being there alone with her.  He found one that not only fit those requirements, but also allowed for a free shuttle back and forth to the hospital. Then he went back to work in Vermont, working three twelve hour days at work, and driving down to Boston for the long weekend, and to relieve me a little bit of the child care.  When he was offered a new job, even though he was worried that he couldn’t commit to it entirely because of Wendy’s health and said so, his boss said, “So you’ll be at 80 percent the first year, and you’ll make it up in the  coming years, I can live with that.”  And so, Michael took a new job as we waited for a new kidney.

When I found out I was pregnant with our second child, also while waiting for the new kidney, I was terrified of telling my husband, because I was scared that it was the one thing that would put him over the edge.  But he was so excited, so happy, that I couldn’t be that worried.  Ok, I was still worried.  New job, new kidney, new baby, in that order.

Now we’re in the present, with two girls who are relatively healthy and stable, and he goes to every sporting event, every recital, every activity.  He arranges the family schedule and sends me and Wendy our invites.  He is his happiest when he is watching his girls perform, especially sporting events, but also for music recitals and art shows.  Everything else comes second to those things.

I am lucky to have a kind and caring partner, who loves being a dad as much as this man does.  Our road has been bumpy with health problems and moves and changes of jobs, but he remains constant.  And so, I really really want to celebrate him on Father’s Day, even if he doesn’t want to be reminded of it, because it’s what started all the trouble, but in its own way, it also started all the grace and greatness of this man.

Happy Father’s Day to all the kickass dads, especially those who are fathers of chronically ill kids, or those who carry an extra burden as a single dad. The world doesn’t give you enough credit, but I certainly do.

The Heroes We Need

I don’t know what I thought motherhood was going to be like so many years ago, but whatever I thought it was, I was wrong.

I recently ran across this quote from Joan Ryan, author of the book, The Water Giver:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that he is exactly the person he is supposed to be.  And that, if you’re lucky, he might just be the teacher who turns you into the person you are supposed to be.”

Of course this reminded me of the quote from Batman, our kids aren’t the heroes we deserve but  the heroes we need.

A few weeks ago, I was fortunate enough to hear the remarkable story of Ario Nour and his family.  Ario had a brain tumor and had to go through a therapy that requires you to remain perfectly still with a mask on your face as you are put on a medical bed in a room, alone, while you have targeted radiation therapy.  It’s called proton beam therapy, and it’s necessary for little kids, to zap the tumor but save the precious brain tissue surrounding it.  As you can imagine, this can be terrifying and many children need anesthesia to undergo this treatment.  The problem is, this isn’t a one time treatment, it’s five days a week for many weeks.  That’s a lot of anesthesia.

Ario, at the age of seven, was very clear when he began his treatment:  he didn’t want anesthesia every day, he would find a way to stay still all by himself.  And he did.  The nurses and social workers were so impressed with him that they had an idea:  Maybe Ario could teach other kids to lay still too.  He tried mentoring another child. It worked.

And this peer mentoring program was born. Kids with brain tumors teaching kids with brain tumors what to expect, what to do, how to lay still.  To practice at home, before the treatment, kids try lying on the couch for increased amounts of time, often with something over their faces, like a washcloth or a spaghetti strainer.  They are allowed to listen to music, books on tape, or something else that will keep them occupied.

Then they get their mask specially made to form fit their face. They get to decorate it, and they use it every time they get treatment.

Other kids, after going through treatment and surviving, went on to mentor other kids.  They are proud to be the experts at something, and to show newbies who are sick and scared that they’ve done it and succeeded. That it was possible.

And the program grew.  It wasn’t just one kid helping one kid. It was a program.  Ario had started a peer mentoring program.

I got to hear him talk at the Family Centered Rounds at Massachusetts General Hospital for Children. Ario has had to go back three times for more treatments.  (Read:  He’s had more than one brain tumor.)  Now he’s in high school, and he’s a normal kid.  Smart, shy, humble.

His parents spoke too.  Not only do they support Ario’s efforts for the peer-to-peer program, but they also support and ride with him for TEAM ARIO, where they ride their bikes 50 miles in the Granite State Quest and raise money to fight pediatric cancer.  Ario and his family have raised over $300,000 and Ario has been honored as one of “The One Hundred.”  It’s a dinner that honors one hundred people at Massachusetts General Hospital who have worked hard to fight cancer.

As I listened to this story, truly an inspirational story, it’s important to remember, Ario isn’t cured. He has recurring cancer.  And his parents have this burden to carry, something no parent ever wants to deal with.  And yet, here they are, parents of a child who started a peer-to-peer program, who’s raised hundreds of thousands of dollars, and yet, who is still chronically ill.

He’s not the hero they deserve, but he may be the hero they need.

Of course, Ario is a dramatic example, but think about your kids and what they have taught you. Have they taught you patience?  Selflessness?  Sharing? Have they taught you how to communicate better or how to fight more fairly?  Mine have.

I’m including the video of Ario here, for you to watch. Grab your tissues.

And take a moment to think about how your kids have changed you for the better.

Holiday Landmines for Kids with Dietary Needs

Happy Springtime!  Well, it doesn’t feel like springtime quite yet for much of the country, but the calendar tells us that the Spring Equinox has already  happened and Passover and Easter are just around the corner.

This can strike fear in the hearts of a lot of parents, especially parents of kids who have allergies or other dietary restrictions.  The reason is because a lot of spring holidays have ritual foods that go along with them, foods that are supposed to be used to celebrate the holiday, either through religious decree or family tradition.

A good friend of mine found out that her daughter has egg allergies. How do you celebrate Passover without eggs?  Its one of the parts of the traditional plate, and it’s the key ingredient for many traditional dishes like Matzoh Brei and Kugel.  It was just inconceivable that they would have to go without eggs during the eight day holiday, where they can’t eat any leavening either. They decided to continue using eggs, but to minimize the use.

There’s no doubt, sometimes you need to get creative if you have a child with dietary restrictions, and this creativity can be seen as assertiveness, not always in a positive way.  Traditions are hard to break.

This might lead to a few family misunderstandings, so thoughtful communication and patience is necessary.  One friend told me of her child’s tree nut allergy and how a lot of Passover recipes have tree nuts in them, so they need to be careful not only looking at the labels, but also informing friends and loved ones to be diligent in their preparations for Passover.  She also finds that she needs to ask on the day of the family gathering to make sure all the rules were followed.  Not everyone loves to be reminded.  Sometimes that means your mother in law might tell you how much better the dish *would have been* if the nuts had been added.  Another friend has a child with celiac disease, so they don’t have Matzoh with wheat in it, and if someone brings Matzoh with wheat, they need to eat it outside.

When it comes to Easter, if your child has allergies, you have to get creative with holiday traditions as well.   A lot of the times that means making new ones with ties to the past.  One friend in Vermont told the story of how she has tried to recreate her mom’s cinnamon rolls using her dietary restrictions.  One friend told of how they make their own food and their own traditions around allergies.  One family only has easter egg hunts at their house because they need to know that peanut free chocolate never touched the inside of a plastic egg.

Here’s a great resource for kids with allergies and Easter Products they might enjoy.

For parents of diabetic kids, you realize quickly after diagnosis, that every holiday revolves around food, and that since all food has a certain number of carbs, you need to keep track. This leads to some awkward encounters…who really wants to count the number of jelly beans for one serving?  Did the child eat one ounce of the chocolate bunny’s head or one-and-a-half ounces?  Do you weigh the bunny before and after?

Suffice to say, the holidays can be stressful. But it’s important to take a moment and be grateful for the things you have:  children who are happy, family who loves you , food to eat, a warm house, and laughter.  The rest are hurdles to be jumped, and stress that comes along with it can be managed. Just remember, parents of Brave Fragile Warriors, you’re brave too.

Whatever spring holiday you celebrate, I wish you the best of health and  happiness!